Personalizing the Academy

Menu

Category Archives: Self Care

In this post, a graduate student in a social sciences program reflects on some ways graduate experience may involve revisiting and managing past trauma.

Yesterday, I woke up to someone wailing at the top of their lungs. It was the type of noise you would hear when people grieve uncontrollably. When I quickly scrambled out of my bed to look out of the window, I discovered nothing unusual other than maintenance fixing the community gate. No one else was outside of my apartment. As I unlocked my bedroom door to peek around the corner of the hallway, I overheard the television playing in the living room. I then realized that my roommate was watching a movie and the person screaming was Angelina Jolie. Nevertheless, this horrific wail triggered me unexpectedly and brought me back to a dark place that I had avoided for most of my adult life.

I immediately retreated to my room and threw myself onto the bed out of desperation. Memories of previous traumatic events began to flood back in my mind. My body began to tremble, while I was sweating bullets. My eyes glazed over and my breathing was tremendously heavy. My limbs became temporarily immobile. I ultimately went into a state of panic and anxiousness, while spiraling out of control with my thoughts. All those years of therapy felt completely worthless during that moment and nothing else seemed to matter. Trauma memories were stored in mind and my body quickly remembered and reacted consequently.

What seemed like hours lying motionless in bed was only about ten minutes. My body slowly began to recover as I realized that I was in a safe environment. I crawled to my yellow bathroom and eventually managed to take a shower, which always seemed to be therapeutic to me oddly enough. As my face became flushed by the scalding, hot water, I was reassured that I was very much alive.

During my panic attack, I initially thought that my body had ‘betrayed’ me by releasing trauma that I had buried for years. But after reading literature on trauma management and previously discussing trauma with mentors, I knew that the human body contributes physiological responses in triggering events to protect itself from potentially hazardous situations. My body was releasing the indescribable grief I held for so long. This unpleasant incident, surprisingly, gave me clearer insight regarding my recent traumas within the academy as a graduate student.

Why is it that the academy often fails to tackle or even acknowledge the experiences of trauma among students and faculty, especially those who are women, LGBTQ people, and people of color? Surely academics recognize the crucial need of providing a safe, empathetic space to share their experiences of trauma, harassment, and microaggressions within the academy without the fear of negative consequence? Trauma should not be stigmatized in the academy nor should academics attempt to silence those who express their trauma memories. Leaders must drastically change how we train, support, and treat survivors of trauma. I hope this essay can be insightful and reflective to members of the academy, especially to those who are graduate students learning how to navigate revisiting experiences of trauma.

In this post, Xan and J announce an upcoming and rolling special issue of Gerontology and Geriatric Medicine focused on managing illness in relationships over the life course, and invite scholars interested in health, aging, relationships of all times, caregiving, and chronic conditions to consider submitting works for this issue and emerging area of research in social, physical, and medical sciences.

Hello readers!

Xan and J here with a teaser for our newest project. In our home communities of Orlando and Tampa, we’ve been spending some time recovering from Hurricane Irma and helping our fellow Floridians do the same, as well as supporting friends in Texas and Puerto Rico in their own recovery efforts. As things calm down more here in central Florida, we’re pleased to roll out our latest effort to amplify voices from lived experience in research.

Earlier this year, we pitched a special collection proposal to Gerontology and Geriatric Medicine. We suggested a content collection focusing on “Aging Partners Managing Chronic Illness Together”. The collection would highlight opportunities for inquiry, evidence-based perspectives, case studies, and new primary research on collaborative illness management among older intimate partners.

Right now there is very little literature on this topic—most published research on caregiving in intimate relationships uses a “sick partner/well partner” model. But our own lived experiences as well as what we have both seen in our work suggested that many people are living a very different reality! We also found no literature whatsoever in conducting our own preliminary review on collaborative illness management that delves deeply into the experiences of marginalized older adults and relationships between people occupying varied genders, sexualities, and relationship types. We very much want to change that!

Our introductory editorial for the content collection at GGM will be up soon (we’ll share on the blog and social media sites when it is), meaning we are ready to accept original submissions from other scholars doing work on this important topic. Unlike traditional “special issues”, this content collection will remain open indefinitely for new submissions. We intend to use the Aging Partners Managing Chronic Illness Together collection as a springboard for both highlighting inspiring innovative research on older adult health that champions people’s unique lives, biographies, and needs.

If your research includes a focus on chronic disease management, older adults, and intimate relationships, we hope that we’ll be able to showcase some of your work in our special collection in the future!

In this post, Xan reflects on the weight of chronic illness, and role of emotions, expectations, and caregiving in the experience of chronic illness and emotion management.

In my last post I wrote about the fallacy of people thinking I cannot carry things because like many people with cystic fibrosis (CF), I am very thin. “But it’s heavy!” strangers will say. “You can’t possibly carry it all by yourself.” If only they knew. I manage just fine with heavy material objects, provided they aren’t especially large or unwieldy. No, the heaviest burdens I carry are those unseen to others.

Knowing the data, knowing people with your condition have an average life expectancy in the high 30s range, constantly explaining “well it’s really a bimodal distribution differentiated by access to care and a bunch of contextual factors” to wide-eyed people whose eyes well up with tears because it’s too hard for *them* to handle to know you are sick. Now *that’s* heavy. I spend so much time explaining things that people could Google, so much time bending over my phone responding to messages asking if I’m okay when what people really want is for me to make *them* feel okay. My neck has begun to hurt from the weight of my head literally dragging me down.

So now I’m holding my phone at 90 degrees to my face, stretching my neck and thoracic muscles, asking myself tough questions about why I’ve always swallowed whole the assumption that it’s my responsibility to do the emotional labor of coddling people in my life under the guise of helping them get educated. It’s never the people closest to me who ask for this. They know better, or they wouldn’t have gotten so close to me in the first place. Asking how I am is kind and affirming. Using that question to spend the next 30 minutes gobbling up all the emotional support you can from me about how hard my diagnosis is for you and how much it scares you…is not. It literally weighs me down.

Being open about your fears is a tremendously good thing in and of itself. It’s where you seek support in coping with those fears that matters. This isn’t black and white; it’s a question of nuances. Ring Theory offers a good way to understand socially affirming flows of emotional support, using a simple algorithm of “comfort in, dump out”. The basic idea here works like an earthquake. The person dealing directly with the challenges at hand (terminal illness, loss of a loved one, sexual assault, etc.) dwells at the epicenter. Then shock waves radiate around the epicenter with progressively lower intensity as distance increases. A life partner feels them most intensely, followed closely by other family members who are close to the person. Then come very close friends, then other friends and colleagues in a much bigger ring, and then casual acquaintances.

I’m a pretty textbook long-surviving CF patient in many ways, including both all the issues I do experience and what has heretofore been more minimal involvement of the pancreas. Whether I have any pancreatic involvement remains unknown, because I definitely have some bizarre endocrine symptoms these days. I just keep coming back to the fact that I had low-positive results on a sweat test *and* so many of the core clinical signs of the disease and nobody gave a damn. Why was my case dismissed when my parents kept fighting so hard to get me medical care? Why did I have to be treated in fragmented little pieces by specialists focused on this or that organ? Why did I have to undergo surgery to rebuild mucous membranes that could have been reasonably well protected by drugs that were already on the market? These questions pull me down like heavy stones.

I see a CF specialist tomorrow for the first time in my entire 33 years of life and these questions spin through my mind constantly. And I feel the lingering fear that this doctor won’t believe me either, that I’ll now be caught in a terrible limbo of knowing I need a specific type of care yet being just as unable to get it as when I had more questions than answers. Maybe I still have more questions than answers. I spend most of my time trying to answer other people’s questions, though. And it has exhausted me so thoroughly that I feel empty inside, as if my disease consists more of the need to justify it and reassure others than of its terrible physical mechanics, which I wind up with little cognitive space to consider. I go to bed each night feeling as if the day has drained all the life from me, questions racing through my mind in the darkness that surrounds.

I don’t have any real answers. I wish desperately that I did, but I don’t, and I often feel as if I’ve failed the people in my life because of that. All I have is a lot of lost time and an opportunity to do things differently with a doctor who stands a chance of understanding my case and my needs. So…to be continued. I’m excited about meeting with the specialist. I try to Be Positive in all things. But there’s so much beneath the surface, and it feels exceptionally heavy today. So I strive to grow more proficient and comfortable in asking others to shoulder a piece of that burden, not my grocery bags or guitar equipment. For it’s the invisible weights that bring us down the hardest.

In this post, Xan Nowakowski explores recent discussions arising from clinical trials for men’s contraception in relation to broader patterns of gender inequity in health and contraception and some of their own experiences navigating gender, contraception, health, and side effects.

I’ve been seeing a lot of posts on social media lately making fun of men for dropping out of clinical trials of hormonal contraceptives due to terrible side effects. This isn’t remotely okay, and it needs to stop. Suggesting that men should martyr themselves on the same crosses other people have been involuntarily nailed to for centuries isn’t a solution, and frankly it’s terribly cruel. The issue here isn’t that men are speaking up about feeling terrible and prioritizing their health in choosing to drop out of the clinical trials for these drugs. The issue is that women reported the same exact side effects in trials of the same drugs that are currently on the market for people with ovaries and uteri. Rather than those trials being shut down as the one for contraceptive pills for people with penises and testicles was, the trials continued and the women’s concerns were dismissed as weakness or figments of imagination.

Reproductive autonomy is a fundamental human right, and people shouldn’t have to feel physically and/or mentally compromised to invoke that right in their daily lives. No one contraception option is right for every single person’s health needs, even within a given sex or gender group. We should have hormonal contraception options for everyone that work without making us feel like epic shit. And nobody–and I mean *nobody*–should ever be discredited for saying a medication is diminishing their quality of life.

The timing of the news about the clinical trial for male contraception couldn’t be more ironic or apt. Those of you who know me well know that I’ve taken regular-dose triphasic oral contraception since I was 17 years old, even though I was ready to get sterilized in my early 20s. Although my doctors would have approved sterilization surgery given my lifelong knowledge that I was childfree, I would still have needed estrogen therapy to combat some of the health problems caused by my autoimmune disease, most notably the threat to my bones.

I took the same two or three brands of generic triphasic pills for nearly two decades. Then when I moved to Orlando, the Publix around the corner from my house didn’t carry any of those and offered me a different generic. Within a few days, things began to go downhill.

My mental health spiraled quickly. I became extremely depressed, which is so completely unusual for me that at first I didn’t realize what was happening. I blamed myself for “fooling myself” about how much progress I’d made with my PTSD or thinking that I could actually make a go of things in my new role with FSU COM. The future became a sucking black hole in my mind, full of nothing but hopelessness and the prospect of being gradually betrayed more and more by my body. I cried all the time. I experienced terrible paranoia and started hearing voices. I found it difficult to trust anyone, including my spouse and my parents. I thought about suicide constantly.

None of this is remotely usual for me. Even during my worst experiences with the PTSD, I haven’t felt like that. I’ve always had hope. You don’t survive 32 years with a disease like mine if you don’t have hope.

I also experienced bizarre changes in my physical health, like my breasts suddenly swelling an entire cup size and becoming painful to touch even while putting on clothing. I was so exhausted every morning that my whole body felt as if it were made of lead. My kidneys hurt and my intestines felt as if someone had tied them in a knot. The flora in my entire pelvic region got completely out of whack and a terrible smell seemed to follow me everywhere. And for some reason, my symptoms always seemed to be worst in the morning and get a little bit better throughout the day, then worsen again in the night.

In the back of my mind, the possibility that this might be a bad reaction to the pills I was given swam around. I wasn’t thinking straight by the time I became seriously concerned. If I had, I would have stopped the pills immediately and called Publix to switch me back onto my old medication. But my mind went instead to blaming myself, to thinking I’d done something to make my body and mind act like that, that I just wasn’t strong enough, that now I was becoming as grotesque on the outside as I felt on the inside.

I tried to communicate with my spouse about it and kept failing horribly. I worried about being a “quitter”, or worse, a bad epidemiologist–blaming medication I’d taken for half my life for my own failings. But eventually, toward the end of the pack when the swelling in my chest had gotten so bad that I was in pain all day and couldn’t wear some of my bras, I blurted this out to J between spells of inscrutable tears.

J stopped in their tracks. “You’re on the wrong pills. Xan, this isn’t you. You’re on the wrong pills. None of this is your fault.” So I stopped taking the pills, which I usually would have done before going to bed at night. When the next morning came, I felt somewhat better rather than worse. By that night, I started to feel a lot better. My chest deflated like a pricked balloon, returning to its usual size within 48 hours. All of my mental symptoms also disappeared. I felt hope and joy coming back into my consciousness. I felt alive again.

My relief was offset by my desire to blame myself. As J pointed out, I couldn’t have been expected to put the pieces together clearly when my mind was betraying me at every turn and making me doubt myself so much. I still feel some of that doubt now, just minus the crushing hopelessness that accompanied it when I was still taking those pills. After all, this wasn’t my first rodeo with medication side effects. I’ve been on dozens of medications, some that I need to survive and others that could have killed me. Shouldn’t I have been “better” at dealing with this kind of stuff by age 32? Not entirely, and certainly not in a world where pharmaceutical companies aren’t expected to be “better” at not marginalizing and ridiculing the adverse experiences of millions of women.

In my mind I don’t see myself as a woman, but this is one of those times where the reality of that being how many others see me has been driven horribly and irrevocably home. I struggle daily now with the feeling that I became every awful stereotype of a “hormonal” woman. The feelings of violation run deep, along with those of disappointment in myself. I got thrown headfirst into a mess of gendered experiences and stigmas, and although I came out alive, I did so feeling horribly dirty and despoiled. Weeks later, the dirt still won’t wash off.

I’m proud of the men who are standing up for their right not to feel like utter garbage physically and mentally in seeking reproductive autonomy and sharing that burden with other gender groups in ways that are long overdue. I just hope that in doing so, they will stand up for all the women who’ve been getting hurt since long before male contraception ever came on the scene. The fact that the FDA has only now, after 50-some years, approved an in-depth study of linkages between depression and hormonal contraceptive use in women, is both telling and damning. The recent closure of male contraceptive pill clinical trials represents an opportunity for all of us to affirm the struggles and amplify the voices of millions of women who have been harmed by paternalistic practices in the testing and prescribing of hormonal contraceptives.

Jay Irwin, PhD, is an Associate Professor of Sociology at the University of Nebraska at Omaha. He received his PhD in Medical Sociology from the University of Alabama at Birmingham in 2009. He is heavily involved in activism and advocacy both on campus and in the larger community. His research and teaching involve LGBT health, trans identities, and sexualities.

I have just completed what has to be the most bizarre and emotionally draining first week of a semester – potentially in my entire academic career, both past and future. I had a rough summer to start. I had an invasive back surgery in July and was recuperating while teaching an online class from a rented hospital bed in my living room. I had a lot of time to think this summer and was excited for the Fall term to begin. I had modified my courses and was ready to engage students in new and exciting ways. My body wasn’t fully ready to go to work, but regardless, I had to go back to work and was intellectually charged to go engage with students. And then I had one of the most exhausting, bizarre, and hurtful first weeks ever.

THE PERSONAL MEETS THE PROFESSIONAL

Actually, this all started the Saturday before classes began. I teach an Intro to LGBTQ Studies course. To be more specific, I created the course, and I am the ONLY faculty member teaching this course. In this class we are conducting oral histories of LGBTQ people in the local community, part of a larger archive project my University just began this summer (http://queeromahaarchives.omeka.net/). I was contacting people all summer to gather a list of people whose history NEEDS to be recorded, and in my class, I am specifically prioritizing people over 50 years old, QTPOC, and trans folx, as their histories get lost the quickest. One person in particular was very excited to participate, but was currently in hospice care. They[1] were an influential and important member of my University community as well, so the archivist and I conducted the interview ourselves, on a Saturday, in their home, while their daughter and granddaughter sat by their side, holding their hand and giving them emotional strength. It was both beautiful and heartbreaking at the same time. They spoke about things – aloud – to people they’d not met before, about topics they’d spoken to very few people about. I felt honored that they let me into their life. I met their generous and amazing children and partner, who fought back tears as we said our goodbyes after the interview. Two days later they passed away. I learned about their passing in an email 15 minutes before I was to go teach my Intro to LGBTQ Studies class, where I would detail the oral history project to the students. And their history was the first life story contributed to this project.

I completely broke down. Thankfully my partner was able to talk with me and get me ready to go to class. When going over the syllabus and the project, I was honest with my students about how important this project is both personally and to the community. Our history in the local community is LITERALLY disappearing and will be forgotten if it’s not captured soon, and my community is not unique in this respect. I managed to not cry in front of the students, but I did see a few students wipe away a tear for a person they had never met. In fact, I knew this person formally for all of an hour and a half, but I can’t begin to explain the impact they have had on my life. I have never been so committed to a project like I am now with this oral history project. I refuse to let my local LGBTQ history, and more specifically the people attached to that history, go unrecognized and unremembered. I have a small suspicion that the person we interviewed held on a bit longer to life to be able to tell their story. To tell us their life. To gift us with their experiences. And I am forever changed as both a person and an academic because of it.

THE PROFESSIONAL MEETS THE PERSONAL

In this same week, I’ve helped students navigate the typical starting back to school stresses – where are my classes, what classes are still open as I haven’t enrolled yet, where do I find parking? But, as the only out trans faculty member on my campus, and someone that our students know from the larger community, many LGBTQ students come to me for support and affirmation of their identities. For example, I had a student show up outside my classroom door as I came in to teach my Intro to LGBTQ Studies class that first day. This student, who uses they/them pronouns, said to me “I need to get into your class.” No problem I said, I can get you a permit code, come on in. They said, “No, I NEED your class. I just got out of a class that was terrible and I NEED your class to feel safe.” I again assured them, no problem, and let’s talk about that other class after our class. I met with them, and they told me their concerns, largely that they felt invisible as a queer non-binary trans person in a white, cis, heteronormative space, and that they felt they had to educate their classmates on their own identities in a class dedicated to gender studies. Later in the day, I met with the professor who had unintentionally excluded this student by not being purposeful in including non-binary or LGBT students. I had to be careful in this conversation as to not make the faculty member feel shamed, but also to advocate for my student and to educate the faculty member on topics I assumed they already knew based on their own disciplinary background. It was an incredibly draining conversation, navigating multiple political levels, on my first day back at work after months off due to surgery, and on a day that I would work 11 hours due to my teaching schedule.

Next, at the end of the first week of classes, I got a call from the director of our LGBTQ center on campus, telling me she may need my help. She had just received an email that a student was in a course where the professor used the word “fag” in reference to gay people. Just in passing. Not as in the historical context of the word or referring to cigarettes in the British usage of the term. Just calling gay people “fags.” I was livid, as was the student and the director. Thankfully, my institution has mechanisms in place to address these situations, and those wheels are turning. But I couldn’t fathom, in 2016, how anyone involved in teaching would think that was acceptable.

To top it all off, a social media flare-up happened during the weekend after my first week of classes, all having to do with they/them singular pronouns. Yes, we’ve come full circle. I had posted, on behalf of my research collaborative’s official Facebook page, a video about how they/them pronouns are not new, are appropriate, and should be used. A debate ensued in which I felt personally insulted and attacked as a trans person. But, being the perpetual educator, I tried to rationally and reasonably respond to rather childish behaviors on the part of other professors at other institutions. As Facebook threads go, the conversation was on-going for about 3 days before it all settled down, but I refuse to be silenced and marginalized by other academics, whose expertise does not fall in LGBTQ or trans studies. I refuse to allow them to tell me and others within my community that they are not valid. That their pronouns are not valid. This is not how academia should work, and I’m consistently saddened to see that this is still sometimes how academia works.

OUR BLURRY AREAS NEED SUPPORT STRUCTURES

Thankfully, I have a healthy community of queer and trans spectrum friends and chosen family, both locally and from all over the world. They have reached out to me when I, the eternal external processor on social media, have posted vulnerable and raw posts discussing each of these issues. With every post, I’ve received love, encouragement, and affirmation. On Sunday, the day when all of the events of the week were being personally processed, I posted regarding my absolute exhaustion, but also my refusal to give up. My continued commitment to fight for those who are invisible in our society – the queer man who “looks straight”, the non-binary student who uses they/them pronouns but “looks like a girl”. And because my LGBTQ friends and family are amazing, I got lots of love. And then, something amazing happened. An academic inspiration to my own career – Jennifer Finney Boylan, the first trans academic that I ever saw, who helped me know that I could be an out trans academic – commented on my post and gave me support and love. It was the first time I had cried happy tears all week, a week of lots of unhappy, sad, frustrated tears.

I’m also incredibly thankful to work at an institution that, while not perfect (nor ever claiming to be), is making real systemic steps to address issues of racism, sexism, homophobia, transphobia, ableism, and all forms of bias campus wide. I have received so much support from administrators regarding the work that I do, which is not always the norm in academia. Support from my colleagues, department chair, dean, and upper administration has allowed me to continue to do the work that I do both inside the academy and outside in the advocacy world. I am grateful and lucky to work at such a university, a privilege I do not take lightly.

SUGGESTIONS FOR NAVIGATING THESE MURKY WATERS

I want to end my own, selfish processing session with some suggestions.

1.) We talk about self-care so much in academia and advocacy circles, but from my own experience, we are terrible about putting self-care into action for ourselves. Do not neglect self-care. Yes, advocate when and where you can, but know when you have to take a step back when your body, brain, and heart can’t go any farther without burning out. There’s a saying in activism circles about self-care: it’s like the safety instructions you get on an airplane – put on your own oxygen mask before you put on anyone else’s. You can’t be an effective advocate for others if you have suffocated yourself by working yourself to exhaustion.

2.) Surround yourself, as much as possible, with those that lift you up. You need those friends and family to keep going. Allow yourself to open up to them and be honest in those conversations. Tell them what you need. Ask for them to support you if they aren’t. And allow them to hug you (if you are one who’s into hugging, as I’m trying to become more comfortable with myself). Human contact can be so healing for us. If you are partnered, allow your partner(s) to comfort you. I can’t even begin to thank my partner for helping me so much this week, by holding me while I cried, by listening to me again complain and rage against injustice, and by just being an amazing human and loving me constantly. Find that one person you can tell anything to, who can be there to support you when you need it the most, whether it be a romantic partner or just a really close colleague.

3.) Find the balance that works for you. Not every academic who works with marginalized groups operates the same in terms of activism and rabble-rousing. I’m comfortable in that world (after slowly ramping up my work in advocacy over the last 10 years), but that’s not everyone’s sweet spot. Find how you are your best in regard to being a professionally engaged academic who is also fighting for social justice. There is no mold, and one size certainly does not fit all.

4.) To academics, just because we have a PhD does not make us experts in all of the human condition. Be open to learning more, and be willing to be challenged by your students. It is the height of academic elitism to assume we are the holders of all knowledge and that it is our job to impart it all to our students. My students teach me new things each and every day, and for that I am grateful. It does not make me less of an expert, but it does make me a better teacher.

In loving affirmation and solidarity, always.

Jay A. Irwin, PhD

Associate Professor of Sociology

University of Nebraska at Omaha

[1] I am using they/them pronouns to protect the anonymity of this person. These pronouns are not necessarily a direct reflection of their personal gender pronouns.

In this post, Xan Nowakowski reflects on and shares a recent publication in Qualitative Report (available at the link at the end of the post free of charge as an open access document) concerning the embodiment and management of visible chronic illness in daily life.

Hello again readers! It’s a new season and a new academic year, and I’m happy to report that I also have a new autoethnographic publication coming out this week. If you’ve been following WWIH for a while, you may remember that earlier this year Sociology of Health and Illness published a piece called “Hope Is a Four-Letter Word: Riding the Emotional Rollercoaster of Illness Management”. This article, which focuses on the day-to-day processes and experiences of living with chronic disease, is still available online along with a video abstract introducing the piece.

In the process of writing “Hope Is a Four-Letter Word” I realized there was another rich topic nested within that study, and wound up breaking this theme out into its own critical autoethnography. Specifically, I focused on the nuances of visibility and representation for people whose chronic conditions produce readily apparent changes in physical appearance. The title comes from a comment made to me many years ago as the symptoms of my autoimmune disease became more visible to outside observers.

In this new autoethnography, I compare and contrast my own experiences of living inside a visibly ill body with others’ stated and implicit perceptions of what my life must be like. In doing so, I explore and refine theories of illness as deviance to accommodate multiple intersecting levels of divergence from normative expectations. I use interactionist sociological theories as well as a variety of other scholarly literature to analyze and contextualize my own lived experiences of embodying chronic illness.

As with most of my work, this piece strongly emphasizes the complex and dynamic interplay of multiple domains of life. These include personality traits, social structure, cultural context, political climate, and many more. Likewise, I focus on concepts of health equity and use my own experiences to amplify attention to persistent systems of marginalization and the voices of those affected. Above all else, I encourage other scholars with chronic conditions to share their own experiences of negotiating visible disease, and to advocate for active incorporation of these narratives in both formal systems of health care and informal systems of social support.

Erika G Abad, PhD, received her American Studies PhD at Washington State University in 2012. Since then, she has worked as a customer service associate, a scheduler, Caddy Head Counselor, Field Director for a policy education campaign, Farmers’ Market team member and oral historian–in that order–since completing her degree. She is currently a regular writer for Women in Higher Education and will be starting teaching full-time this fall.

Writing this as a PhD is hilarious, in the midst of so many narratives regarding PhD poverty. Unlike those, however, I approach the conversation cognizant of my choice, my white collar poverty’s flexibility of time and of the systemic issues at play.

When applying for affordable care act (ACA) mandated insurance last April, a friend walked me through process, as he was employed by a grant specified to educate new participants. I picked my insurance, made the consistent monthly payments. From April 2015 to January 2016, income has changed, creating the possibility to qualify for public aid. This is the amusement of millennial scholars, and the heartbreak of parents and families who hoped a quality education would keep their progeny from the ‘shame,’ and stigma of relying on ‘government handouts.’

Chasing Eligibility

The millennial scholar amusement, that despite being a generation removed from limited education, two generations removed from the ability to read and write, those skills and assets do not secure a better income. And, the varied jobs I have had outside of (higher) education, reinforce the freedom to choose to live this way. It’s a commitment to the dream issue, which I have often questioned, much like I struggled with believing in the democratic necessity of a liberal arts education. The experience both with ACA and most recently, public aid eligibility paperwork, has brought that to light.

I begin writing this reflection in the midst of trying to assess where my paperwork is. It’s January, nearing the deadline, and the last thing I need is to be penalized for something that I can’t control and something that I did. In other words, I have submitted the paperwork, waiting for a response could cost me eligibility and any assistance, so I stop working to primarily address this issue. I stop working to call the series of north side offices where I would presume my file could be. During the first call, I connect with an immigrant woman who, assuming I work for the office, begins to explain her case. In the middle of her narrative, I say, “I don’t work for the office, it seems they connected us.”

“I must have pressed the wrong number,” she says. I smile to myself and say, “it may just be a glitch, try calling again.” Here, my educational-based privilege starts to sink in and I say, ‘shit,’ if they connected two clients together, what’s it like in the office?

That Friday’s phone call was preceded by conversations on Wednesday, and, on Thursdays, finally learning how to log on to get my pay stubs. Working class income, not wages, nor time limitations as a result of being a community-based researcher. The catch-22, the irony of PhD’s trying to find a way to stay relevant and competitive in an incredibly tight market. Changing is not that easy, by the way, because those other jobs where we could easily transfer our skill sets, see the PhD doesn’t have to stay. Cynical, yes, and a reminder education-based privilege has its limits.

So, that Friday, I am reviewing the list of numbers to call. The one on the mailer, the one I was told to call because that office did not, supposedly, have my paper work. So who else has my paper. The woman at the second office said she would call me back. I cannot get an operator on the third number I call. This is a major deadline day, so I try the office. The crowded waiting room confirms what I expect from a public service office at the last minute of paper work. Research grant funding works in funny ways, which means I cannot afford to wait. My collard shirt, unfaded jeans, and comfortable shoes remind me that my frustration will be temporary. Middle class privilege rings again and yet, my paycheck is the reason I still search for an answer.

Why do I choose to write about this? And, while I am writing, I’m scared about it. Scared about airing dirty laundry like most folks in this circuit are, because, what established PhD’s with full-time jobs, are thinking about the next generation scrambling to make ends meet, produce quality work and stay relevant enough to get a full-time job? For those that are, what can they do about it with strained free speech, confused and disgruntled students, and the working class, undocumented youth who deserve a chance to be more than underfunded educational institutions and the state say they can or could be.

So, I talk about it because my white-collar poverty and my intellectual training gives me the tools to complicate the difficulty. Because, as I am praying to be eligible for public aid to have more income at my disposal, to live more than from paycheck to paycheck, I am reminded of the threats to layoffs and the continued cutting of funds from public offices in my city/state. What else is a city with a debt like Chicago’s, what else can a state unwilling to tax specific populations like Illinois do? So, despite how frustrated I am by being connected to another client, not being able to find an operator to answer the phone and crowded waiting rooms, I know I am not the only one stressed. Each office which I have dealt with this week is struggling because none of their jobs are secure. Their stress, their inability to answer last minute questions coupled with my own stress clearly articulate both the need for Affordable Care Act but also the financial and institutional hoops created to assure the best access to health care possible.

The ‘limits’ of education-based privilege

Dividing my time between doing my job as a researcher and looking for long-term positions, explain why I didn’t immediately address the needed documentation to complete my application for public aid. In other words, because my PhD entitlement thought I did everything I needed to do but didn’t, I am working at the last minute to solve a problem I could have addressed had I paid more attention.

And yet, I still have time and flexibility to solve the problem. I did solve the problem and, what’s more, had the question answered by the first office—the one that said they didn’t have my paperwork. I knew to call them back because, when I finally reached the final office, they gave me all the information I needed to speak to the rep assigned my case. The organizational mess this was speaks volumes to the effects of cut funding, strained/stressed employees and the greater work ACA supporters need to do in order to make sure those in more dire positions than I get their needs met.

At this point, it is important to clearly define how, despite how little I knew about the system, my entitlement informed a lack of action, what are the forms of privilege I exercised that allowed me to solve my problem by the end of the business day.

rearrange my schedule at a day’s notice—a day off did not affect pay

call each office and speak to someone to whom I can readily explain what courses of actions I took and ask what else needs to be done.

Fax required information to multiple numbers

drive to offices when phone calls don’t address my questions

work, if needed—revise a paper, read a book, review ethnography notes— while I wait in line to address office needs (I didn’t have to but it was a plan B I had lined up)

be patient with the person on the other end because I was not losing a day of work

document all courses of action and speak with a discourse, dress in attire that may inform how others will take me more seriously

prepare to argue with the office because of the institutional limitations regarding meeting deadlines because of documented calls, detailed articulation of systemic issues in calling each office and awareness of the letter

The dance of affordability

The affordable care act is not yet affordable not only because of the hoops of today, but, more specifically, because state, city and federal offices in charge of making sure we are all insured vary in institutional and professional stability. Their instability parallels and conflicts with the uncertainty that those of us applying for public aid or any insurance may have. That’s a research question I hope someone is tackling in economics or political science, or even law.

I know this is just a hiccup along the way to a prolific career that can still promise white collar 9-5 middle class, insured stability. I know I have greater possibility to choose that anytime I want, comparable to others in the room and on the phone that Friday. Knowing that, however, does not change the weighted responsibility of the errors this system still needs to address. How does the education of life translate—and, right now, it’s all about talking about this question of access and productivity.

We all need to be healthy to effectively contribute to the market; we need access to health care stabilized and, in the midst of this, we need to work to make sure that happens. The ‘we’s’ here vary because of where the power lies, because of what choice, opportunity and support inform about that power. As a PhD with options and opportunities that have arisen since that January, praying for public aid, that’s what has me scratching my head. How do we work in specific career paths completely codependent on the government for its existence, completely codependent on society’s imposed value on our work?

In this post, J. Sumerau reflects on the possibility of focusing on and talking about dreams in contexts where we are more often encouraged to focus on what we should do rather than what we wish for.

A couple months ago, I posted a piece here about the emphasis on obligations, or the dreaded should, I have noticed so many fellow academics wrestling with over the years. In the piece, I noted the possibility of shifting our focus from what we should be doing to what we have actually done that might deserve some credit from us or others.

Based on messages and discussions with people, as well as my own reflections, I could likely add more to the piece I published at this point, but that is not what I want to do today. Instead, I want to talk a little bit about dreams and the importance of them – the wants instead of the shoulds – for self care and fulfillment.

Did you have a dream when you were younger or last night?

Does your current life, career, or circumstance match this dream or have you on a path to reaching it?

I think these are important questions that I never hear people talk about within or even beyond the academy. Social psychologists have even noted that having dreams is a very important aspect of selfhood, whether or not such dreams ever come true in one’s life. They provide motivation, joy, pain, and other emotional experiences that facilitate growth and development in a wide variety of ways. Of course, this makes me wonder why I don’t often hear people talking about their dreams. More often, I hear people talking about what they are doing, should be doing, have to do, or haven’t gotten done yet. I fully admit, as I noted in the previous piece, that academic culture especially seems to encourage – if not require – these questions much more so than any talk about desire, hopes, or dreams for the world or one’s self. At the same time, I think we – myself included at times – miss something when we forget to also think about whatever we might wish for, deeply desire, and hope for in our best imagined versions of our world and life.

I can’t pretend to evaluate the dreams of another, but I do think dreams are very important whatever shape they take. I’m reminded of friends and colleagues I admire who dreamed of being academics, teachers, scholars, researchers, and university administrators their whole lives. At the same time, I think about the fact that this was not the case for me, and that I kind of stumbled into an academic life as a way to facilitate and fund my actual dreams of being a writer and activist. In both cases, my colleagues and I had dreams that we ultimately got to touch in our own lives for various reasons and thanks to a lot of things beyond our control going well. Thinking about these things leads me to wonder what other people dream about, what do other people want most in the imagined case where it somehow works out, and what discussions about these questions might reveal about ourselves, about others, and about our lives.

I’m also reminded of just as many friends and colleagues I admire who dreamed of things that never came true, or continue to dream of things they are still chasing. In both of these cases and similar to the above, the dreams themselves speak to the people, what they value, what they desire, and what matters to them most once upon a time, in the present, or in some imagined future. Thinking about this leads me to wonder what other dreams people have given up, what dreams changed over time as people learned more about themselves and the world, and how past and current dreams or other desires speak to one’s current life or efforts.

As I said, I can’t offer any real answers to these questions, but I thought it might be nice to at least broach the conversation. I thus invite people to think about, write about even on this site if you wish, and consider what your dreams might be, and what such reflection might tell you about yourself and others. I’ll close this post with a simple question.

What do you get to do that feeds you enough to make the things you have to do worthwhile and what do you have to do to facilitate your ability to do the things you really want to do?

In this post, J. Sumerau reflects on interactions with other academics who experience considerable stress due to structural and interpersonal conditions encouraging them to focus on “what they should be doing” instead of what they have accomplished.

I “should” be working on project x. I “should” be doing work-related task y. I “should” be preparing for academic meeting, gathering, conference z. I “should” be more productive in comparison to this person, that goal, or this norm. I “should” be doing more in my work about this issue or that problem or this population or that concern.

I should…

I should…

I should…

“Should” is a word I find myself hearing rather often from colleagues in my career to date, and it often carries with it an expectation that one is not doing enough in some way, shape, or form. In such cases, people I happen to know are hard working, incredibly talented, deeply committed, and quite impressive by any measure I can come up with downplay whatever they are doing, accomplishing, or achieving at a given moment based on what more they feel they “should” be doing, accomplishing, or achieving at that moment.

I should note that I am not in any way disparaging the people in question. Rather, from what I can tell, the dreaded should – as I call – is something they feel and experience deeply that causes them pain, turmoil, or other forms of anxiety and stress. I further recognize, as others have noted, that this “shoulding” is encouraged in academic contexts as well as broader capitalistic contexts. People are constantly exposed to messages suggesting they are not doing enough, requirements that are often incredibly vague and subject to interpretation, and very real fears concerning job security, opportunities, and resources in the academy. Put simply, I am not knocking the people who feel this way, but rather I find it quite impressive that they manage to do so well while feeling these things on a daily basis. For me, their management of such feelings demonstrates a special type of strength wherein one feels regularly that they are losing a game, and yet somehow manages to continue on, do solid work, and inspire and connect with others.

At the same time, as someone who – thus far it appears – is immune to “shoulding” or thoughts about what I “should” be doing, I think this is a pattern that should be noted, discussed, and recognized because the effects of such stress on people likely – and from what I’ve seen empirically do – take an incredible toll on their happiness, health, and well being. In many cases, for example, I see people who experience their lives in ways where “I should be doing x” overshadows all the things they are doing, takes them away from important self care, and / or leaves them constantly feeling like nothing will ever be good enough. This is a recipe for negative outcomes, and yet it is encouraged in academic fields in many cases. I cannot pretend to understand what it is like to feel this way – I tend to live in the moment to the point where even when I need to plan for the future I don’t do so all that well – but I wanted to talk about how these patterns feel or appear to me as I often serve as a source of support for many people who experience such feelings. In many cases, I am lucky enough to be helpful to them in such cases, but in so doing, I am continuously struck by how powerful and damaging “should” can be in the current academic climate.

As such, I wanted to focus here on what we may miss when we become – or are trained to become – focused on “should” instead of “did” or “done.” If you are one who often feels like you “should” be doing more, take a moment and ask yourself what have I done instead. I ask this simple question all the time when colleagues start talking about how they “should” be doing something. Universally, the answers reveal a lot of accomplishments – for example, well I did submit that paper; well I did inspire that student; well I did something special for my partner, friend, or other loved one on Tuesday; well I did rest and relax this weekend; well I did get to the gym; well I did start outlining that grant; well I did just present at a conference last week; well I did some volunteer work or charity last month; well I did get better at “insert hobby here” this week; well I did come up with that new teaching technique I wanted to try this semester; well I did get to hang out with my partner, friends, kids, etc this week; or well I did think about a paper idea that could be really cool.

I could go on, but odds are you are doing lots of things – personally and / or professionally – that you could be giving yourself credit for, and when I have asked people these questions and they have answered they often feel better at least for a little bit. Ask yourself how your life might be different if you could learn – or be trained to – focus on what you did do instead of what you “should” be doing. I’m not saying this will work for everyone, but in many cases, I have seen people realize that they accomplish far more than they have been giving themselves credit for.

I also think we need to look at where the dreaded “should” comes from in most cases I have seen. Whether it is comparisons to other people or norms within a given department or program, the dreaded “should” tends to arise from the conditions of contemporary academic life. People face serious concerns about, for example, job security; time for lovers, friends, family, and self care; deadlines tied to advancement or even landing one of an increasingly small pool of decent paying jobs; and a culture that is focused on “what are you doing next” rather than “what have you already done.” These pressures are greatly exacerbated for academics from marginalized backgrounds, and scholars in search of stable employment in the present market context. Each of these factors – and many others – feed the idea that one is never quite good enough, should be constantly working toward something new to set one’s self apart or meet some (often vague) requirement for a job, for tenure, or other potential source of stability, and should spend as much time as possible working on that next thing that will make all the difference.

We see these patterns translate into a continuous series of “shoulds” and “somedays.” When I have the job, then I’ll focus on my self care, my personal life, that study I want to do, or other factors, but for now, I should be x, y, and z. When I have tenure, then I can have time for a family, take that trip I’ve been planning, write about what I really want to write about, or otherwise do something else, but for now, I should be x, y, and z. These types of feelings and statements are not only commonplace among academics from what I can tell, but also understandable when we consider the broader context of academic norms, markets, and opportunities. In all such cases, however, we are encouraged by these structural and interpersonal patterns to downplay right now and what we have achieved or are achieving for the sake of some future possibility.

As a result, I find myself wondering how much of right now people miss due to these patterns? What might academia be like if we were encouraged to celebrate the moment instead of wishing for the future? What might it be like if we came together against the broader cultural patterns that create these conditions? Until such conditions can be changed, I also wonder what little things each of us may do in our own lives to ease the dreaded should we or our colleagues face, and help lessen the negative consequences of such patterns?

I’m not saying it would be easy to change the culture of “should” or the economic and political conditions that facilitate such stress, but I think we would all benefit if we came together, and gave ourselves and one another credit for the tremendous amount we all do accomplish personally, politically, and academically. At the very least, I think we should talk about these issues, help each other as we face and experience these shared conditions in our own ways, and look for ways to create better conditions for ourselves and our colleagues individually and on a broader structural level.

Lisette E. Torres is the Assistant Director of the Cooper Foundation Center for Academic Resources at Nebraska Wesleyan University as well as a Ph.D. candidate in the School of Education at Iowa State University. Her scholarly interests include intersectionality, critical race theory, knowledge production, critical visual and textual discourse studies, and the sociocultural context of science and higher education. In honor of Fibromyalgia Awareness Day (May 12th), in this post, she reflects on what she calls the “narrative of sacrificio” and how it informs her experience as a Boricua mother-scholar living with fibromyalgia.

Sacrificio. Sacrifice. To give up something for the sake of someone else. To destroy, renounce, or lose something for a belief or an end.

Growing up in a Puerto Rican household full of women, I am quite familiar with sacrifice. My two sisters and I would be reminded almost daily about the sacrifices that family members have had to make for the love of family and country – my grandmother’s humble beginnings living in poverty on a farm on the island, my father and aunt having to walk to school (sometimes with no shoes), my grandmother coming to the mainland U.S. to work in a factory, my father fighting in Vietnam, my mother managing the household, my father having to travel 2 hours to and from New York City to provide for the family . . . the list goes on. These stories of sacrifice were meant not only as a way to demonstrate how resilient our family has been but also to remind us of the responsibility that the three of us had as Puerto Rican women. We learned that it was our obligation to always try our best and to give up our own wants and needs for the family. Social scientists often refer to this socialization as instilling the values of familismo, or one’s prioritizing family over one’s own needs, and marianismo, the notion of the assumed submissive female gender role of Latinas.

However, this narrative – the narrative of sacrificio – is one that I have also experienced as an academic. The “publish or perish” mantra, working more than 40 hours per week, and the unspoken expectation that scholars (particularly women) put off having families or give up having families all together encompass some form of sacrifice, whether it be time, money, or personal fulfillment. For women of color in the academy, this sacrifice is much deeper. It is the fragmentation of the mind, body, and spirit or the creation and acceptance of multiplicity (Ong, 2005). It is forgoing speaking the language of our ancestors to converse in the elitist, colonial jargon of the ivory tower. It is physically moving away from our families and communities in pursuit of job opportunities, which causes a multitude of additional challenges that come with relocation.

From my own personal experience as a Boricua mother-scholar, there is a great tension between having the racialized gendered identity of a Latina and an academic identity. I often feel pulled in different directions. On the one hand, I want to spend as much time with my son and husband as possible. I want to keep a clean house, provide healthy meals, and be present with my child, who is growing up so very fast that I do not want to miss a thing! Guilty about putting him in daycare, I forgo working on projects in the evenings and on weekends to try to get the most of my time with my family. I also tend to put aside some of my goals and needs in order for my son and husband to be happy; for example, I often have to take the day off to take care of my son when he is sick and have never expected my husband, who is also an academic, to do the same.

On the other hand, I am well-aware of the social and structural challenges of being a woman of color in the academy (Gutiérrez y Muhs, Niemann, Gonzàlez, & Harris, 2012). We often have to work harder and longer to receive the same recognition as our White, male colleagues. The purpose and content of our scholarship as well as our inherent intelligence is questioned, and heaven’s forbid that you have a family! The baby penalty is very real; mother scholars are often viewed as being less committed to their field and to the academy as compared to their male counterparts. They are less likely to find a tenure-track job, receive little to no assistance with childbirth support or childcare services, and do not receive the proper mentoring or career advice to help them manage family and work. Add stereotypes about women of color being fertile and emotional and you can see how women of color in the academy are in a double-bind (Malcom & Malcom, 2011) that is even tighter when you incorporate motherhood and the narrative of sacrificio.

As every academic knows, there is little time and energy to devote to research, teaching, service, and one’s personal life. Every hour is precious. We talk about “work-life balance,” though we know this is a complete myth. We try to remind everyone about self-care, exercise, and finding time to recharge (which we need to do, do not get me wrong!), all the while trying to ignore the culture shift necessary to change the neoliberal influence on productivity in higher education. Yet, we still judge others based on what we assume about them and the expectations of academia. If someone leaves campus before 5 p.m., then we think they are slacking off or cutting corners. Daily conversations revolve around “how tired” we are because we “stayed up until 2 a.m. working on a grant proposal/manuscript/course.” We complain about all the varied activities that we are engaged in while simultaneously looking down on others who may not be as involved on campus. We are complicit in perpetuating the culture of busy and the narrative of sacrificio among our colleagues. And we do this without considering the impact it has on women of color or on individuals with chronic illness/pain.

Personally, the narrative of sacrificio – from my Puerto Rican upbringing and from the academy – wears on me daily, both psychologically and physically. In the spring of 2015, I was diagnosed with fibromyalgia, a chronic syndrome with no known cure that is diagnosed by exclusion. The symptoms can vary among people, but they can include the following: widespread muscle and joint pain, fatigue, chronic headaches, hypersensitivity to sensory stimuli (e.g., cold, heat, light, sound, and touch), inability to concentrate (known in the community as “fibro fog”), stiffness, restless sleep, mood swings, and depression. These symptoms have made my career in academia difficult, aside from the structural challenges I also face as a woman of color who is also a mother. However, the words used to describe my lived experience with chronic pain are extremely limiting and cannot fully illustrate how it shapes the narrative of sacrificio in my life. Despite limitations in language, I will try to explain what it is like to have fibromyalgia. Having fibromyalgia is . . .

Sleeping a full 8 hours but getting up and feeling as if you only had 3 hours of sleep

Waking up in the middle of the night with non-stop thoughts or tingling arms/legs

Getting up in the morning and feeling like you worked out all night because your body is so sore and stiff

Like walking through really thick mud or walking around with weights around your ankles all day

Losing what you were going to say before you can even say it; the words get stuck and you have trouble with recall

Losing your train of thought in mid-sentence or forgetting the names of common things (i.e., you know what it is but you cannot get the word out)

Revisiting files, readings, emails, notes, etc. multiple times because you cannot concentrate long enough to remember what you read/saw

Feeling like a rag doll on a rack, limbs being pulled out of their sockets

Never feeling completely comfortable in a seated or resting position

Being hypersensitive to temperature changes; for me, I am almost always cold and cold temperatures cause deep pain in my bones

Being hypersensitive to touch; there are days when I literally cannot stand wearing socks!

Feeling like an open nerve

Feeling on edge, like you are ready to fight at any time

Feeling incredibly disappointed in a seeming lack of progress due to energy level

Feeling guilty and depressed that you cannot do all the things that other parents/academics can do

When a chronic condition like fibromyalgia intersects with the narrative of sacrificio found within Puerto Rican culture and the academy, it makes an already difficult journey as an academic almost impossible. As a mother-scholar of color, I am continuously trying to avoid the cultural taxation (Padilla, 1994) placed on faculty of color, balancing being an advocate for students of color on campus while also not participating on every single institutional diversity committee. Like most scholars of color and working moms, I work twice as hard to receive half the credit. I worry that I am not a good scholar or mother, knowing that I am being judged by others on both fronts. Stereotype threat, imposter syndrome, and racial microaggressions are daily challenges for me that can wear on the mind, body, and soul. I know that I already have three strikes against me in a White patriarchal society – I am a woman, I am a person of color, and I am a mother. I am viewed as “less than” and “unworthy” of being in higher education. I am already presumed “lazy,” “inarticulate,” and “incompetent” by the mere fact that I am a woman of color, and I sometimes fear that my fibromyalgia adds to those assumptions.

In an effort to confront the narrative of sacrificio in my life, I have decided to accept that I have a finite amount of energy to give due to fibromyalgia and, since stress can exasperate my symptoms, I must embrace what Dr. Eric Anthony Grollman calls a radical reprioritizing of my life. As such, I have started practicing Taiji every week and taking time out for a massage every month, which helps with stress and pain management. I try to not to bring work home with me, accomplishing as much as I can in the office as possible and being okay with that. I also try to practice slowing down, with great reminders from my colleagues Dr. Riyad Shahjahan and Dr. Kimine Mayuzumi on their blog. While I am working on me, I want to share my lived experience with other women of color who suffer from chronic illness who may also be academics and mothers. You are not alone and the narrative of sacrificio does not define you! We do not have to sacrifice ourselves. As our sister in the struggle, Audre Lorde, wrote in a Burst of Light (1988), “Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.”